My interest in nutrition was initially sparked by a desire to help people heal themselves. What I could never have known, was how much my knowledge would help me when it came to my own family…
At the age of three and a half, my daughter was diagnosed with a sudden onset, rare and aggressive epilepsy. Prior to that she was reaching all her milestones and we embraced that classic phrase – all anyone ever wants is for their child to be healthy.
But what happens when, in an instant, they regress and become really ill?
My daughter’s seizures came in lots of different forms and we tried multiple medications before she was diagnosed with a refractory epilepsy – in effect, three or more medications were unable to stop the seizures. They were so damaging to her little brain that she became nonverbal, drooling and was back in nappies by the age of five.
I knew something needed to change and so I drew on all the knowledge I’d soaked up over the years as a nutritionist and embraced my inner “Mama Warrior” to fight for my daughter.
The turning point.
While we were in the midst of endless hospital and neurologist visits, we began hearing more and more about the ketogenic diet as a last resort. And, two years into my daughter’s diagnosis, we truly felt like we had exhausted all our other options.
When we initially undertook the high-fat, low-carb diet, it was still a relatively new topic on the health agenda in Australia and was cutting edge at the time. But I felt, as a nutritionist, if anyone could embrace this diet and nail it, it would be me and my family. Confidence much?!
When you undertake a classic ketogenic diet for a condition such as epilepsy, the diet is treated like a medication in the body as the ketones have an action on seizures via its ability to affect ketone bodies . The amount of fat, protein and carbohydrate needs to be precisely measured on scales and you can only calculate the exact amounts via a program that the dietitian gives you. Everything is closely monitored on a keto diet as there are well-known side effects, such as constipation, dehydration and even kidney stones in rare 5–8 per cent of cases.
Within a week of this very strict diet, my daughter had stopped drooling, she could engage with us more and within a few weeks her seizures had reduced significantly. It was a huge win for her and for us.
Interestingly, the better she became, the more aware she was of the food she was eating and she started rejecting it. We decided to transition her from the more difficult classical keto to a more manageable modified Atkins diet, which more closely mirrors the keto diets that are spruiked for weight loss. At least by following this avenue, more protein was allowed in the diet, fat was unlimited and the carbohydrate content was still kept to a minimum.
So, where are we now?
My daughter is now almost nine and has been off the diet for some time. After two years following the strict diet, we experienced “food fatigue”. To be honest, it takes a lot of effort measuring and weighing everything you eat, and as a busy mum, I think the load is heavy enough, even without this extra responsibility. Still, knowing how much of a difference it can make to your child’s life, the changes are doable.
While we now eat a more varied diet, there’s still a strong emphasis on non-processed foods and as IQS says – JERF. We make an effort to incorporate good quality fats in our diet every day in form of avocado, butter, coconut milk and organic free range meat and eggs. We also focus on good quality carbohydrates and stick to low-fructose fruits.
My daughter is also doing really well! With the combination of a healthy balanced diet, supplements and anti-epileptic medication, she’s starting to read and write. Although she is delayed, she wants to learn and grow and for us – anything she goes on to achieve is a milestone to be celebrated in our eyes.
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